Advocacy

The Hydrocephalus Scoop on Capitol Hill — June 2025

June 24, 2025

June updates on Medicaid cuts, CDMRP research funding, and telehealth bills impacting the hydrocephalus community. Make your voice heard on the Hill!

Read More
president, NIH cuts, hydrocephalus, research

Explainer of the President’s FY 2026 HHS Budget Proposal

June 5, 2025

President’s FY 2026 budget proposes major NIH cuts, agency mergers, and restructures that could reduce neuroscience and hydrocephalus research funding.

Read More

The Hydrocephalus Scoop on Capitol Hill — May 2025

June 2, 2025

House passes bill with major Medicaid changes—millions could lose coverage. Learn how this impacts the hydrocephalus community and what’s next in the Senate.

Read More
medicaid

Medicaid Impact of U.S. House Reconciliation Package on People with Hydrocephalus

May 19, 2025

Learn how proposed federal Medicaid changes could affect people with hydrocephalus, including burdensome administrative requirements, cuts to vital health services, home care, and coverage for medical equipment.

Read More
Capitol Hill, April

The Hydrocephalus Scoop on Capitol Hill — April 2025

April 28, 2025

Congress has returned to Capitol Hill following Easter recess and is beginning the reconciliation process for a major legislative package. Big decisions are being made — and we have everything you need to know.

Read More
HHS, CDC, NIH

Assessing Recent HHS Reductions in Force (RIF) Layoffs and Their Impact on the Hydrocephalus Community

April 15, 2025

Mass layoffs at HHS are disrupting key health agencies like the FDA, CDC, NIH, and ACL—jeopardizing research, care, and innovation for the hydrocephalus community. These cuts threaten access to treatment, delay medical device approvals, and weaken support systems for patients nationwide.

Read More
Bradley E. Weprin, Healthcare

When We Cut Research, We Cut Hope: The Human Cost of Medical Funding Cuts

April 4, 2025

When we cut research, we do not just slow progress. We delay relief. We postpone innovation. And, for many patients and families, we delay hope.

Read More
The Scoop from Capitol Hill

The Scoop from Capitol Hill – March 2025

April 1, 2025

Get the latest federal updates on hydrocephalus research, advocacy, and policy changes. Learn how you can take action to protect critical funding and healthcare access!

Read More
Advocacy, The scoop

The Scoop from Capitol Hill – February 2025

March 3, 2025

House and Senate Republicans have been focused on passing the Administration’s priorities. The Senate approved a billion-dollar budget framework focusing on defense and border enforcement funding. On the other side of the Capitol, the House recently passed its own budget framework. This package is wider in scope and costs.

Read More
Hydrocephalus Association Medical and Scientific Advisory Boards Statement on Cuts to NIH Funding

Hydrocephalus Association Medical Advisory Board And Scientific Advisory Board Issue Response to Cuts to NIH Indirect Cost Payments

February 15, 2025

The Hydrocephalus Association Medical Advisory Board and Scientific Advisory Board urge the Administration to rescind the directive for the National Institutes of Health (NIH) to cap indirect costs for research funding at 15%.

Read More

Hydrocephalus Community Advocates for Change on Capitol Hill

February 10, 2025

The Hydrocephalus Association brought over 50 key leaders from the hydrocephalus community to advocate for change by meeting with their congressional representatives on Capitol Hill.

Read More
January, Advocacy, Hydrocephalus

The January Hydrocephalus Scoop on the Hill

February 5, 2025

The 119th Congress is in full swing. Republican leadership is zoned in on crafting a large legislative package that includes key priorities around tax, immigration, and budgetary issues. The package will likely go through a process called reconciliation, which allows certain budget-related bills to bypass the 60-vote filibuster in the Senate.

Read More
Advocates, Capitol Hill

Advocates to Rally on Capitol Hill for Hydrocephalus Awareness and Research Funding

January 31, 2025

50 key leaders in the hydrocephalus community from 18 states will convene in Washington, D.C., for Hydrocephalus Capitol Hill Day.

Read More
Executive Orders, trump

Hydrocephalus Association Expresses Concern Over Executive Orders That Could Affect Hydrocephalus Research

January 28, 2025

The Trump Administration recently issued Executive Orders that could have long-term consequences for hydrocephalus research, potentially impacting the health of hydrocephalus patients, particularly children.

Read More
Hydrocephalus Community, 2024

Looking Back at Key Accomplishments in 2024

December 23, 2024

2024 was a year full of legislative accomplishments for the Hydrocephalus Association and the broader hydrocephalus community. Our successes could not have been achieved without the hard work of advocates from across the country. Partners in Congress were some of the strongest contributors for our mission as well.

Read More
Hydrocephalus Challenges

U.S. House Foreign Affairs Committee Holds Hearing on the Challenges Affecting Global Hydrocephalus Patients

December 19, 2024

The House Foreign Affairs Subcommittee’s November 20th hearing discussed global brain health challenges, focusing on hydrocephalus in developing countries. Experts, including Dr. Benjamin Warf of NeuroKids, highlighted the need for better care and training to support patients, particularly in low-resource regions. The hearing also addressed the lack of USAID programs for brain health and the importance of international aid for hydrocephalus treatment.

Read More

The Exclusive Hydrocephalus Scoop on the Hill | Key Updates for November 2024

December 3, 2024

Washington, D.C. is buzzing as Congress pushes key legislation and the Hydrocephalus Association partners with advocates to drive priorities forward. With government funding set to expire on December 20th, a short-term resolution is likely. The new presidential administration and Congress will bring major changes, especially in the first 100 days. Stay tuned!

Read More

Traumatic Brain Injuries Delegated as Chronic Condition by Medicare

November 13, 2024

In a monumental step for Americans living with traumatic brain injury (TBI), the Centers for Medicare and Medicaid (CMS) recently added TBI as a qualifying condition for Medicare Advantage Chronic Special Needs Plans (C-SNP).

Read More
open enrollment

What Hydrocephalus Patients Should Know for Medicare Open Enrollment

November 13, 2024

As Medicare beneficiaries navigate through the open enrollment period, it is crucial for them to understand the surplus of 2025 changes as they choose a new Medicare insurance plan. The Medicare Open Enrollment Period began on October 15 and will close on December 7th. 

Read More
Hydrocephalus Scoop Capitol Hill October

Get the Exclusive Hydrocephalus Scoop on Capitol Hill for October 2024

October 28, 2024

As healthcare advocates race to secure passage of critical bills before the end of the 118th Congress, the Hydrocephalus Association (HA) is joining forces on Capitol Hill, advocating for vital legislation to support Medicare coverage for breakthrough devices, strengthen the medical workforce, ensure fair billing practices, fund brain research, and raise hydrocephalus awareness.

Read More